PKU News @howmuchphe
National PKU News provides support & resources to the PKU community. Phenylketonuria (PKU) is a rare genetic metabolic disorder that requires a low-protein diet pkunews.org Montclair, NJ Joined June 2015-
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PKU News retweeted
Thrilled to announce that flok will receive $800,000 from @cziscience Rare As One Project to advance care and research in rare inherited conditions of protein metabolism. Honored to be part of this movement! flok.org/news/flok-rare… #RareAsOne #flokHealth #CZI #patientledresearch
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PKU News retweeted
Thank you @RepMcGovern for advocating on the House floor today for the 2.7 million Americans with gastrointestinal or inherited metabolic disorders who rely on #medicalnutrition. It's #TimeforMNEA
Thank you @RepMcGovern for advocating on the House floor today for the 2.7 million Americans with gastrointestinal or inherited metabolic disorders who rely on #medicalnutrition. It's #TimeforMNEA
PKU News retweeted
Sharpen your pencils ✏️! The Guthrie-Koch Scholarship is ready to empower higher education students in our flok. College students with Classical #HCU, #MSUD, an #OrganicAcidemia, #PKU, #Tyrosinemia, or a #UreaCycleDisorder can apply by March 15 at scholars.flok.org.
🎉 Celebrate PKU News' transformation to @flokhealth and our community's future with a gift to flok in 2023. All gifts will be matched 💪 Amplify your impact and uplift our community by supporting flok today! flok.org/takeflight 🚀
As we expand our support & services beyond just #PKU to those with #MSUD, #HCU, #Tyrosinemia, #UreaCycleDisorders, and #OrganicAcidemias, we know you have questions! Follow @flokhealth to learn more!
As we expand our support & services beyond just #PKU to those with #MSUD, #HCU, #Tyrosinemia, #UreaCycleDisorders, and #OrganicAcidemias, we know you have questions! Follow @flokhealth to learn more!
Exciting news this #NewbornScreening Month! In Oct, National PKU News becomes flok, focusing on #PKU + more inherited metabolic disorders. We're going data-driven & staying community-led. Learn more & get updates at flok.org! #raredisease #patientledresearch
Camp was amazing and we cannot wait for next year! Announcement: In-person Camp will be May 30 - June 2nd, 2024! Thank you to everyone who made camp possible, especially YOU campers! #pku #ureacycledisorder #hcu #msud #tyrosinemia #organicacidemia #OTCdeficiency #flok
LAST CHANCE, VIRTUAL CAMP IS TOMORROW! It's not too late to make connections with the people who get you. Register before 8pm Pacific Time at pkunews.org/camp #pku #ureacycledisorder #hcu #msud #tyrosinemia #organicacidemia #OTCdeficiency #flok
Emails are out, boxes are shipped, Virtual Camp is THIS SATURDAY!! On the fence? Act Fast! Register before 8pm Pacific Time at pkunews.org/camp #pku #ureacycledisorder #hcu #msud #tyrosinemia #organicacidemia #OTCdeficiency #flok
A great team of volunteers spent last weekend packing more than 215 camp kits! Haven't registered yet? You can still join the fun on 8/12 and it's only $5 at pkunews.org/camp! #pku #ureacycledisorder #hcu #msud #tyrosinemia #organicacidemia #OTCdeficiency #flok
The Low-Phe Life is an animated series that explores the lighter side of metabolic living! Catch the season 2 PREMIERE on August 12th! Register today at pkunews.org/camp #pku #ureacycledisorder #hcu #msud #tyrosinemia #organicacidemia #OTCdeficiency #raredisease #flok
Learn a delicious new recipe and enjoy a live Q&A with Chef Brenda Winiarski as well as meal planning for *all* tolerances with Jenn Beazer RDN. Register today at pkunews.org/camp #pku #ureacycledisorder #hcu #msud #tyrosinemia #organicacidemia #OTCdeficiency #flok
Hey @NSPKU @MDDA_AU we’d love to have you and your followers join Virtual Family Camp! Many sessions will be available on demand, so you can watch them on your schedule if time zones don’t match up!
Join more than 500 members of the metabolic community for VIRTUAL FAMILY CAMP on August 12th! Register now: pkunews.org/camp 🌏International 👪 All Ages #pku #ureacycledisorder #hcu #msud #tyrosinemia #organicacidemia #OTCdeficiency #raredisease #flok
Last shot to snag the kit goodies for when you connect with your community at Family Camp! pkunews.org/camp #pku #ureacycledisorder #hcu #msud #tyrosinemia #organicacidemia #OTCdeficiency #raredisease #flok
Register for Family Camp by 7/1 to secure your kit! pkunews.org/camp #raredisease #metabolicdisorder #flok #pku #ureacycledisorder #hcu #msud #tyrosinemia #organicacidemia #OTC #IEPM
Join your community from around the world at Virtual Camp! It's a day of activities, talks, and fun as well as an at home camp kit. Reserve your spot today at pkunews.org/camp #raredisease #flok #pku #ureacycledisorder #hcu #msud #tyrosinemia #organicacidemia
Thank you to the more than 250 campers from 14 states who attended our record breaking in-person camp at Washington Family Ranch. Virtual Camp is around the corner on August 12th. Reserve your kit and register now at pkunews.org/camp #lowprotein #metabolicdisorder #flok
In just a few hours the 20th anniversary of Family Camp will be here! Want to join in on the fun? Register for Virtual Camp August 12th pkunews.org/camp #lowprotein #metabolicdisorder #flok #pku #ureacycledisorder #hcu #msud #tyrosinemia #organicacidemia #raredisease
Anita MacDonald @macdonj
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NSPKU @NSPKU
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Kate Learoyd @PKUFamily
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Bernadette Sheehan Gi... @sheehangilroy
1K Followers 5K Following Lecturer Researcher Advocate #PKU #LowProtein #BrainHealth #RareDisease "Ní neart go cur le chéile" The views and opinions expressed here are solely my own
Clair W 🧡 @ClairBear42
663 Followers 832 Following Ginger #PKU Adult & Mumma. She/Her. Blogger.👩💻🍓 Expert on films, ice cream, cats and tea. 🎮🌜#ADHD 🏳️🌈
NPKUA @NPKUA_Info
1K Followers 453 Following The mission of the National PKU Alliance is to improve the lives of individuals with PKU and pursue a cure.
Chloë Ormerod @OrmerodChloe
381 Followers 222 Following
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289 Followers 301 Following Wife, mum to an 16 year old with phenylketonuria (PKU), new dog mum, ELCE in Clacks
Caroline Graham @CarolinePKU
415 Followers 654 Following Mum, Designer, Artist, NSPKU volunteer, 3 kids 2 with #PKU all views my own
Promin Metabolics @ProminMetabolic
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HCU Network America @HCUAmerica
726 Followers 957 Following The mission of HCU Network America is to help patients with #Homocystinuria and related disorders manage their disease and to find a cure. #HCUNetworkAmerica
Małgorzata Henek @ma_henek
326 Followers 542 Following Boardmember of ESPKU. PKU Patient & Advocate. Wspieram chorych na Fenyloketonurię. Interesuję się zdrowiem i polityką społeczną. Loves: ski jumping + 📖 🎶📺🚗✈
Duncan Noble-Nesbitt @DNobleNesbitt
275 Followers 194 Following Specialist Nurse, tenor, travel loving, new experience, answer seeking type of guy. Lifelong PKU experience and on treatment #PKU #RareDisease Own views Tweeted
Jessica Brown @jess_brown10
273 Followers 293 Following
Alvaro Hermida @Info_Rares
2K Followers 1K Following Specialist on Metabolic Diseases and always looking on the bright side of life.
PKUhub @PKUhub
1K Followers 445 Following PKUhub... The virtual meeting point for PKU's...such a big part of a small number of peoples' lives...Est'd 2004. It's all in our genes! 🧬
ESPKU @official_espku
1K Followers 33 Following Official Account of the European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria
Low Protein Connect @LowProConnect
1K Followers 391 Following Providing delicious recipes, education, great services and inspiration to support people with metabolic conditions. #FINDYOURPHENOMENAL
Synlogic @synlogic_tx
3K Followers 505 Following Synlogic is a clinical-stage biotech company advancing novel, oral, non-systemically absorbed biotherapeutics to transform the care of serious diseases.
Paul McKellar @mckellar_paul
593 Followers 509 Following English Literature (BA Hons) Graduate 2021. Support Worker. PKU Warrior. Trialist of anything.
Billy @Billy2897717525
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Charlotte @magiccucumberz
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Eder Moura @neurogeneticaa
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Zaw Myaw. N @ZawmyawNyi
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Audrea P @Auddyone1983
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Christian Rance @Krostan_
51 Followers 55 Following I am unaffiliated with any organisations, I just speak my mind. Orthodox Christian, Anglo-Russian.
Becky Antonucci @antonucci_becky
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PKU_Greg @brewcrewgreg
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jslabachdm @jslabachdm
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Louis Addeo @louis_addeo
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Oumar Makine @MakineOuma56402
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Bro Saeed Consulting ... @Bro_Saeed1
18 Followers 232 Following I help individuals transform their lives as a faith-based coach. My goal is to help you overcome dissatisfaction and find purpose through your faith.
Billy @Billy4204971754
0 Followers 6 Following sweet loving indvidual with pku and am doing great on current meds love to cook and entertain with food
Anima Tu Nutrición @animatunutri
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Christopher Cassidy @chrisk_1986
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LilithRichard @5HGVc1qP8hhy6
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Christy @SusanBa53774289
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milena @milena1969
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Kelly @nakatak50740453
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Solace Nutrition @solacenutrition
21 Followers 193 Following Safe, reliable, and effective nutrition formulas that help individuals with unique metabolic nutritional needs and chronic diseases.
Robyn Fairley @robynmfairley
16 Followers 50 Following Vitaflo Key Account Manager - North of England & PKU Parent 🌿
Stuart Sumner @StuartSumner15
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Gillian Sapia RN @GillianHSapia
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Juanma Domínguez @juanmax83
87 Followers 170 Following Software developer - Dedalus Healthcare Systems Group
Mary Giammarino @MaryGiammarino
8 Followers 193 Following
Yahya Yahya @YahyaYahya23736
2 Followers 91 Following
jakub @jakubrudnic
15 Followers 89 Following
John Cotter @Delicalised
0 Followers 65 Following
Mi_PKU_Blog @MiPkuBlog
3 Followers 22 Following
RCaca @Rahmatunisiaaca
6 Followers 230 Following Bismillah.Sesuatu keburukan yang kamu lakukan akan kembali pada dirimu & Keluargamu.aamiin.
diane sassone @sassone15472
13 Followers 81 Following
john Foulds @johnFoulds13
0 Followers 13 Following
Aoife Murphy @AoifeMurphy40
71 Followers 489 Following Solicitor. ⚖ Ex Cabin Crew. 💄Iarlaith’s Mam - our PKU Hero. 💙 #grateful Instagram: aoife_ni_mhurchu All views are my own.
Annabelle Skidmore @AnnieSkidmore2
104 Followers 253 Following PhD student @ BCU 🎓 Health Advisor @ BUPA, PKU patient 🌱
Amr Mahmoud @Mando2951997
2 Followers 173 Following وقد يبتليك الله ليصلح فيك شئ لاينصلح إلا بالإبتلاء
Arianna Martin, PsyD @DrAriannaMartin
0 Followers 35 Following
Girl In The Green Dre... @GirlGreenDress
69 Followers 233 Following ‘Honest to god your tweets are like journalism’
Jenny @jewren
114 Followers 474 Following Cymraes/Welsh. Wrecsam fan, British Tennis fan, Mum to 2 - one with PKU (one without).
Essie @ball_essie46
237 Followers 3K Following
Anita MacDonald @macdonj
2K Followers 642 Following All tweets discuss low protein foods to help children on low protein diets. All views are my own.
NSPKU @NSPKU
3K Followers 1K Following The NSPKU exists to help and support people with PKU, their families and carers. It was formed in 1973, see https://t.co/f9QHejwhkW
Bernadette Sheehan Gi... @sheehangilroy
1K Followers 5K Following Lecturer Researcher Advocate #PKU #LowProtein #BrainHealth #RareDisease "Ní neart go cur le chéile" The views and opinions expressed here are solely my own
Clair W 🧡 @ClairBear42
663 Followers 832 Following Ginger #PKU Adult & Mumma. She/Her. Blogger.👩💻🍓 Expert on films, ice cream, cats and tea. 🎮🌜#ADHD 🏳️🌈
NPKUA @NPKUA_Info
1K Followers 453 Following The mission of the National PKU Alliance is to improve the lives of individuals with PKU and pursue a cure.
The Journal of Inheri... @JIMD_Editors
4K Followers 827 Following At a recent Council meeting a decision was made that the SSIEM will no longer interact with X. Please find us on any other Social Media channel.
Chloë Ormerod @OrmerodChloe
381 Followers 222 Following
𝔸𝕝𝕖𝕩𝕚�... @mrs_martin_2012
289 Followers 301 Following Wife, mum to an 16 year old with phenylketonuria (PKU), new dog mum, ELCE in Clacks
Promin Metabolics @ProminMetabolic
1K Followers 169 Following Family run company supplying low protein foods and meal solutions for people with #PKU
HCU Network America @HCUAmerica
726 Followers 957 Following The mission of HCU Network America is to help patients with #Homocystinuria and related disorders manage their disease and to find a cure. #HCUNetworkAmerica
Duncan Noble-Nesbitt @DNobleNesbitt
275 Followers 194 Following Specialist Nurse, tenor, travel loving, new experience, answer seeking type of guy. Lifelong PKU experience and on treatment #PKU #RareDisease Own views Tweeted
PKUhub @PKUhub
1K Followers 445 Following PKUhub... The virtual meeting point for PKU's...such a big part of a small number of peoples' lives...Est'd 2004. It's all in our genes! 🧬
Louise Robertson @louisedietitian
3K Followers 869 Following Dietitian 💁🏻Specialising in Inherited Metabolic Disorders🍴Dietitian for @galactosaemia 🍎Nutrition blogger 💻 Tweeting own views.
ESPKU @official_espku
1K Followers 33 Following Official Account of the European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria
Low Protein Connect @LowProConnect
1K Followers 391 Following Providing delicious recipes, education, great services and inspiration to support people with metabolic conditions. #FINDYOURPHENOMENAL
Paul McKellar @mckellar_paul
593 Followers 509 Following English Literature (BA Hons) Graduate 2021. Support Worker. PKU Warrior. Trialist of anything.
Natasha Fox (Cotter) @foxcot
712 Followers 2K Following Mum of beautiful brave girl born with PKU. Senior leader. NPQH. Swim mum and swim coach. Passionate about teachers being valued. All views my own.
Tom Chimiak @TomChimiak
1K Followers 1K Following Award Winner. Short Film Director | Videographer | Artist | Event Filming | Docs | Music Videos | @LeedsArtsUni Filmmaking Senior Lecturer | PKU Content |
Rare Disease Day @rarediseaseday
42K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
TobiasHagedorn @hagedorn_tobias
195 Followers 374 Following Managing Director of DIG PKU Germany; Secretary of European Society for Phenylketonuria (ESPKU); ExecCom Member of Global Association PKU (GAP)
Catelyn Baack @catelynbaack
48 Followers 105 Following
ThemeGrill @themegrill
1K Followers 179 Following WordPress Company behind popular - ColorMag, Zakra, Masteriyo, User Registration, Everest Forms, & more. Follow us for WordPress tips, offers, & tutorials.
Pure Buttons @PureButtons
2K Followers 2K Following Pure Buttons specializes in custom buttons. Our pin-back buttons are the gold standard for all your promotional, band, & campaign buttons!
PTC Therapeutics @PTCBio
2K Followers 298 Following PTC is a patient-centered biopharmaceutical company focused on discovering, developing & commercializing medicine for patients with rare disease
flok @flokhealth
50 Followers 7 Following Redefining clinical care and research priorities in metabolic health through the power of patient data.
Urea Cycle Disorder @ureacyclerm
414 Followers 67 Following Our vision is to shape a world where all rare conditions are understood and treated. Helping you understand, manage and talk about #UreaCycleDisorder
Urea Cycle Disorders ... @UCDConsortium
195 Followers 76 Following The UCDC is dedicated to improving the lives of individuals affected by urea cycle disorders. An international collaboration, part of NIH RDCRN @rarediseasesnet
CheckRare @CheckRare
3K Followers 2K Following Leading publisher and learning platform focused on rare diseases. Rare Diseases Are Our Focus, Expertise, and Passion.
PKU GOLIKE – Feel t... @GOLIKEmetabolic
468 Followers 694 Following Brandnew medical food for a real change in dietary management of inborn errors of metabolism. #PKU
Build Up DIETITIANS @BuildUpRDNs
10K Followers 1K Following Encourage #RDs #RD2B to #stand4science 🔍 Managed by RDs in US,Canada & Spain. Edgy memes & #factsnotfears https://t.co/u1wV3QeXcX…
Diti Kohli @ditikohli_
4K Followers 2K Following professional gossiper // all things @bostonglobe business
The Takeaway 🎙 @TheTakeaway
36K Followers 2K Following The Takeaway is a national daily news and information program from WNYC, PRX and WGBH that ended production on June 2, 2023. Episodes archived on our website.
Helena Bottemiller Ev... @hbottemiller
30K Followers 6K Following Founder of @foodfixco, a publication all about food policy. Sign up: https://t.co/LoIhiI4gxp. Polk & James Beard Award (2X) winner. Former @politico.
All Of It With Alison... @AllOfItWNYC
19K Followers 1K Following All Of It w/@alisonstewart on @WNYC is about culture & our culture at noon on 93.9FM/820AM, or podcast. Tweets are from TEAM ALL OF IT. Instagram:@AllOfItWNYC:
Google for Health @GoogleForHealth
31K Followers 76 Following Official Google for Health news and updates on how we’re progressing our mission to help billions of people be healthier.
Girl Scouts @girlscouts
90K Followers 2K Following We Are Girl Scouts. Girl Scouts bring their dreams to life and work together to build a better world. Join us. Community guidelines: https://t.co/Th34yWoJwz
Califia Farms @CalifiaFarms
8K Followers 2K Following We’re creating a future where plants replace dairy without compromise. Life’s too short for one type of milk. #Calilujah Contact us at [email protected].
DISORDER: The Rare Di... @DisorderRare
906 Followers 206 Following Two rare disease dads took their films for Menkes Disease and USP7 & built them into a festival for all films on rare disease. https://t.co/Qjsl21HRH4
LAMetabolicDisordersC... @LouisianaMDC
21 Followers 21 Following The mission of the LMDC is to support, educate, and advocate for patients and families that are affected by metabolic disorders.
Sticker Mule @stickermule
214K Followers 223 Following 1️⃣ Follow us 2️⃣ Reply to any post 3️⃣ Write "@stickermule frame this" 4️⃣ We reply with a framed post within a few minutes.
Once Upon a Farm @onceuponafarm
3K Followers 272 Following 🥕 Organic, farm-fresh snacks & meals 🍎 Baby’s first bites to school snacking 👩🏻🌾 Co-founded by Jennifer Garner 🛒 At Target, Whole Foods, & Kroger
Chan Zuckerberg Initi... @ChanZuckerberg
27K Followers 451 Following We are working at the intersection of AI and biology to advance science, build powerful technologies and transform health.
Michel Tchan @MichelTchan
263 Followers 168 Following Physician at Westmead | Adults with rare genetic metabolic diseases
Little Bellies @LBellies
186 Followers 259 Following From stroller to schoolyard, our ranges are designed to support every step of natural child development.
Gratify Gluten Free @GratifyFoods
483 Followers 132 Following At Gratify, we’re a bit obsessed with great taste. Our certified gluten free snacks are so surprisingly delicious, you'll have plenty of reasons to smile.
RareDxRd @DxRare
9 Followers 28 Following RD working in rare conditions | Always finding FOODS for PKU | Join me! Become a Partner for PKU | @pkunews
ProPublica @propublica
877K Followers 673 Following Pursuing stories with moral force Bluesky: https://t.co/EyqUiH0kn8 Newsletter: https://t.co/mGR9bzZXr1 Donate: https://t.co/kjR1VIlKOd
Chris Vanderveen (yep... @chrisvanderveen
34K Followers 5K Following duPont-Columbia/Peabody/IRE/6X National Edward R Murrow Award winner | @9News Director of Investigations | [email protected]
New Jersey EDA @NewJerseyEDA
8K Followers 3K Following The NJ Economic Development Authority is committed to ensuring that businesses have the tools & resources they need to grow & thrive in the Garden State.
AWS Nonprofits @AWS_Nonprofits
305K Followers 69 Following Info on AWS resources, events, news, products & services for #nonprofits & NGOs. We help orgs dive deep & do BIG things in the cloud. Also: @AWS_Gov & @AWS_Edu
Yogurtland @Yogurtland
14K Followers 3K Following Our original recipes are created with love by using scratch-made, handcrafted flavors from our very own dairy. #yogurtland
Airtable Status @airtablestatus
4K Followers 7 Following Updates on the status of Airtable. Follow @airtable for product updates.
Airtable @airtable
62K Followers 833 Following Airtable’s AI app platform turns data into interfaces, automations & agents—just ask Omni, your AI app builder. Build AI apps faster, no code needed.
Horizon @HorizonNews
5K Followers 2K Following Horizon Therapeutics is now part of Amgen. We encourage you to follow @Amgen. The Horizon X page is no longer active or monitored.
Sarah Chamberlin @altChamberlin
80 Followers 170 Following Rare Disease advocate, NJ resident, mom of 2–one with PKU. Struggling through this #formulashortage for the medically fragile. Tweets are my own.
Ella Newbould RD @ella_newbould
355 Followers 262 Following Paediatric Dietitian @gloshospitals 🚑| MSc in Dietetics @MyBCU 👩🏻🎓| Food🥗, Animal🐱, Crafts 🧶, Music 🎶 & Plant Lover 🪴 |All views my own
Grace Shelley @GraceShelley30
197 Followers 183 Following Specialist Paediatric Dietitian💙 All views are my own.
Green Slice @GreenSliceFoods
72 Followers 217 Following Green Slice makes a plant-based diet more appealing and accessible with plant based foods that still have the meaty taste, and taste great! #organic #soyfree
Gillian Taylor @Gillian76810509
93 Followers 68 Following a mum, a nurse practitioner, a pku advocate interested in anything bringing PKU awareness. Loves life & fun! 😍
GoLowPro @golowproapp
21 Followers 58 Following GO LOW PRO is a low-protein grocery & restaurant locator for those with restricted diets due to metabolic disorders. User-driven because you know the diet best
Miyoko's Creamery @MiyokosCreamery
15K Followers 1K Following “ME•YO•KO’s” The World’s Finest Plant Milk Creamery. Compassionately Made. Phenomenally Vegan.
Sweet Tomatoes / Soup... @souplantation
20K Followers 16K Following Farm-fresh ingredients, artisan salads, baked goods and soups made from scratch. All updates will be posted to @sweettomatoes
Heidi Ho @HeidiHoFoods
2K Followers 375 Following Heidi Ho! makes authentically awesome plant powered foods that are packed with veggies and wildly delicious!
Liberation Kitchen @LiberationKichn
1K Followers 546 Following 🌱 Vegan-owned!🍦 We serve made-to-order #vegan comfort food, soft serve, donuts and more. 🍔 Brought to you by @uptonsnaturals
Buddy Fruits @buddyfruits
2K Followers 163 Following We think fruit is perfectly good by nature, so the less we mess around with it the better! #GoodByNatureTrends for United States
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